Parent Well-Being over 6 Months in a Randomized, Controlled Caregiver Mediated Intervention Study for Toddlers with Autism

Background: Converging evidence suggests caregivers of children with ASD experience more stress than caregivers of typically-developing children or children with other disabilities (e.g. Hayes & Watson, 2013). Parenting stress potentially counteracts the effectiveness of early interventions, negatively impacting parental and child outcomes (Osborne et al., 2008). Kasari et al., (2015) examined differences in parental stress between caregiver-mediated (JASPER) and parent education interventions (PEI) and found a reduction in child-related stress for the PEI group, and no change in parent-related stress for either group from entry to 10-week exit. Examining longitudinal follow-up data and specific subscales of parental stress will aide in better understanding of specific stress factors and their maintenance after an active treatment concludes.

Objectives: This study aims to extend previous work by Kasari et al., (2015) by exploring parent-subdomain scores as measured by the Parenting Stress Index (PSI; Loyd & Abdin, 1985) during the active treatment and follow-up phase of a randomized, controlled intervention study for toddlers with ASD and their caregivers.

Methods: Participants (n=86) were from a larger research study comparing effects of two treatment conditions on joint attention outcomes of toddlers with ASD (Kasari et al., 2015). The toddlers and their primary caregivers were randomized to one of the two treatment groups: parent psychoeducation (PEI) or 1:1 caregiver-mediated social communication intervention (JASPER). The present study examines Competence, Isolation, Health, Attachment, Role Restriction, Depression, and Spouse Relationship subscales of the parent-related stress domain of the PSI by treatment group at entry, 10-week exit, and 6-month follow-up. Generalized linear models were used to analyze changes in parent-subscale scores across the three timepoints. ADOS Calibrated Severity Score (CSS) was used to account for autism symptom severity.

Results: Significant time-by-group interaction effects were present for three of the parent-subscales: Isolation (b= 0.153, X²= 6.89, p= 0.030); Attachment (b= -0.3083, X²= 6.72, p= 0.034); Depression (b= -0.77, X²= 6.87, p= 0.032). These effects were only present when analyzing across all three timepoints. No group-by-time interaction effects were found for the other four parent-related stress subscales.

Conclusions: Although Kasari et al., (2015) found overall reduction of parental stress in the child-related domain in PEI group with no change in the parent-related domain from entry to exit in either group, our analysis indicates that over a longer period of time (6 months), changes are present in sub-scales of the parent domain of PSI. JASPER parents reported higher scores for the Isolation subscale and lower scores for Attachment and Depression subscales when compared to the PEI group over time. This translates to JASPER parents reporting lower levels of depression and improved feelings of closeness (attachment) with their toddlers in comparison to PEI group. However, parents who received JASPER also experienced higher levels of isolation at follow-up. JASPER caregivers might have felt more isolated and less supported to independently implement intervention strategies without active coaching after exiting the study. Psychoeducation and booster sessions may help mitigate such perceived isolation after the active treatment period ends.